by Lorraine Gibson.

Sienna Hutchings is a very special little girl. So special, that she has the power to turn Bournemouth Pier purple for a day.
On Monday, March 20, the iconic landmark will be bathed in violet light in honour of Sienna and others like her who have the rare medical condition, Champ1.

Short for Chromosome Alignment-Maintaining Phosphoprotein, the name refers to a specific mutation that occurs during mitosis, or cell division, and roughly halves crucial protein in part of the genetic make-up that’s essential for proper neurological function and development.
Symptoms are manifold, though the most common are delayed development, lessened intellectual incapacity and severely delayed, or even loss of, speech.
So ultra-rare is the disorder, that three-year-old Sienna from Wimborne is one of just two known people in Dorset with it, and one of only 150 people worldwide.

Her parents, Sarah and Scott, hope the pier’s light show, which marks Champ1 awareness day, will increase people’s knowledge of the condition.
“We are so excited that the pier will be turning purple,” says Sarah.
“It is the colour associated with the charity, both here and in the US.
“We’d love people to see it and know why; that’s why we wanted to share our story.
“On Champ1 awareness day, if people want to know more about it, they can follow our Facebook and Instagram pages – Champ1 UK – where we’ll share more information.
“The best way to raise awareness is to share our posts and ask us questions.”
I ask Sarah about early symptoms.
“We knew something wasn’t quite right in pregnancy with Sienna as she had a high nuchal fold (fluid in the neck), but all tests came back clear.
“Once she was born, it became apparent as she got older that she was missing developmental milestones.
“She also had a small head compared to her weight and height and a squint in both eyes. At a year old, we were referred to an incredible paediatrician who changed everything and began the process of getting her Champ1 diagnosis.”
The impact on Sarah, Scott and Sienna’s lives is immense.
“Due to Sienna’s developmental delay she’s unable to do things that other children of her age can, says Sarah.
“For example, she struggles to feed herself, isn’t potty trained and needs her play to be scaffolded and supported by us.
“Alongside completing her different daily therapy programmes, there’s a large impact on our day-to-day life. However, Sienna is an incredible little girl who is so determined.
“We are very lucky to have an incredibly supportive family who adore her and want her to do well.”
Amazing therapists aside, truly expert advice is scant and they rely on help from other families of ‘Champ1ons’, as they call them.
“In terms of support for our family, there is very little. There is a Facebook group for those closely connected to someone with a Champ1 diagnosis.
“And there’s an amazing private Facebook group that you can be part of if your child has an official diagnosis.
“The families in it are so supportive and have a wealth of knowledge and expertise. “As the condition’s so rare, experts don’t have the answers, so as parents we are striving to get them for our children.”

SPECIAL: Little Sienna Hutchings with mum and dad Sarah and Scott

Currently, there’s no cure or significant treatment for Champ1.
I mention that I read about how personalised intervention using traditional therapies might offer some improvement and ask whether that offers them hope.
“Yes, that does seem to be the case. We’re lucky that I’ve worked with children with SEN for more than 10 years, so have lots of knowledge to support Sienna, particularly with her communication.
“She has a team of experts around her, including physiotherapists, occupational therapists, speech and language therapy and portage.
“We also have an incredible paediatrician who supports us and does all she can to help. We also have a geneticist who keeps an eye on Sienna’s development.
“We are also very lucky to have a brilliant team at Sienna’s nursery in Ferndown, who go over and above daily to support and nurture her.
“She is doing so well in all areas of her development and we have no doubt that she will continue to thrive with the continued support of the professionals and our family and friends.
“She really is an incredibly special little girl who has achieved so much and overcome so many barriers in her life so far.
“We are so proud of our Champ1on.”